[Warning: Don't do a Google image search of hydrops fetalis if you don't know what it is because it can be/is incredibly upsetting. Here's the definition: An abnormal collection of fluid in at least two different fetal organ spaces. Sam's was caused by severe anemia from the parvovirus B19 virus (the virus that causes Fifth disease) which is VERY common in daycares, where I picked it up when I was pregnant.]

Hello, ladies! I haven't been here in forever! I'm looking for any moms of little ones who had hydrops fetalis. My daughter was diagnosed at our level 2 ultrasound in September 2014 and was born in January 2015. The only lasting sign that she was ever sick is extra skin around her abdomen. We're still waiting to see if her brain development was affected. So far she's hitting most of her developmental milestones, except for language.

Our pediatrician keeps telling us that Sam will grow into her extra skin, but admits that she is the first baby she's treated who has survived hydrops. Sam's a year now and rather than growing into her extra skin, it appears that the extra skin is growing in proportion with her. It's not a concern now, but I'm envisioning her teenage years and possible bullying because of her different body shape. Any moms out there with words of wisdom?

i have never been in your shoes. so i can only offer hugs and i would trust the pedi to keep your child healthy. if the extra skin is a concern then ask your pedi for a recomendation for a cosmetic or peds surgeon to take a look and see if anything can be done.

I would specifically request to be referred to a specialist who has worked hands on with Hydrops fetalis, and not by someone who is going off "text book" no child is textbook IMO. Sam deserves to be treated by a fully knowledgable practitioner with life experience. And I would fight your insurance tooth and nail if they don't want to cover a referral. Even if the referral needs to come from outside service providers.

I have no experience with your specific situation but my DD who is 4 did suffer a condition when she was 2. Her Primary care Ped at the time had not experienced her situation hands on (it was more a text book memory for him). Because she was misdiagnosed for extended weeks her condition became so much worse (she had Guillian-Barre syndrome). It took her 2 months to learn to eat with utensils (hand function) again, 3 months to crawl/roll over, over 6 months to learn to walk (with months of physical therapy) and a year to regain muscle strength. She still has Polyneuropathy as a lasting effect but we know it will subside. I had to fight and fight and fight for weeks with her provider. Then I had to fight with her so called "specialist" in the hospital when she was admitted. California has a supplement insurance program through children services that covers extended care for special conditions. The hospital placed my DD in the program without us knowing and it was a huge blessing to have that extra coverage. My youngest son who is 8months is also in the program now because he has ventricular septal defect (4 holes in heart) and it covers his pediatric cardiologist fees. Perhaps your state has something similar ( I am sure it does). It is not based on income.